Awareness Sucks

Today I wanted to do a companion post to yesterday’s “Emma Discusses – Awareness“, with a post entitled, “Emma Discusses – Acceptance”. I love when Emma tells me to put something she’s written on the blog, because her words are always so profound and insightful. But once we returned home Em was too tired, so I resigned myself to writing about Autism Awareness and what that means to me. After all today is World Autism Awareness Day.

I don’t look forward to April the way I once did. April is a loaded month when many of my friends feel they must hide or cannot look at social media because they know they’ll be triggered by all the calls to “light it up blue,” the hype from organizations like Autism Speaks who seem to do nothing, but speak… it’s exhausting and in the end the awareness they’re pushing isn’t awareness that helps either me or my daughter. What they seem to call awareness, is to my mind hyperbole, fear mongering and irresponsible. I’ll be honest, I would be happy if Autism Speaks folded up their little tents and found something else to rant about.

In addition to Autism Speaks’ dire calls for action, the CDC released new statistics – 1 in 68 – and I just groaned because I know how those numbers will be used, forget that they’re almost completely meaningless and actually not an accurate number as Jim Martin explains in his most recent post, 3 Reasons Why Canadians (and Everyone Else) Should Stop Using the 1 in 68 Autism Stat (For Now). More fear. More anger. More calls for action. More listening to people who don’t know what they’re talking about. More and more and more and more and I just want to crank up Pharrell Williams’ Happy at full volume, put it on repeat and dance.

So in the midst of all the calls for awareness I’m going to hold my daughter close, revel in her presence, sink into my immeasurable gratitude that I get to be her mom and feel the joy in knowing she is a young woman who is talented, funny, creative, wise, insightful, kind, and more forgiving than anyone I’ve ever met. And, boy, am I proud of her.

Your family is very inspirational : )
Do you mind if I post a link to this to the various “What are you going to do to ‘light it up blue’ this mont?” posts on linkedin? Not sure if it’s too in your face and radical/arguementative, but I want people to stop and think and hopefully listen. I think these people have the best of intentions, but they aren’t aware. Any ideas on how to walk that fine line between educating/sharing your principles and coming off like a jerk? I’m kind of new at this, so feeling a little insecure on how much to “push” – especially as this is my first really AWARE April.
THANKS!

Do you know of the best “local” autistic friendly organizations to donate to? I can’t find the list that was out a while ago and want to refer people to alternates to AS in a blog post – instead of buying a blue lightbulb, donate those $3 to ____. Thanks!

Ariane, thank you so much for the mention. I think you the best suggestion I have read in a long time about dealing with the fear-mongering: listening to Pharrell is the perfect antidote to the messages that autism is something to run away from.

My first exposure to autism wasn’t Autism Speaks. I don’t think they existed back in the 70’s. My first research included Kanner, Bettelheim,, and Bernard Rimland. Rimland seemed to make the most sense and he seemed to really like the autistic kids he worked with. I read “Son Rise” by Barry Neil Kaufman, because we adopted a teenager diagnosed erroneously with Schizophrenia, which is why I researched autism anyway, because autism used to be called “childhood schizophrenia.” Anyway “Son Rise” made me think autism could be helped by acceptance, love, and lots of teaching. So the next time we adopted we put autism on the list of disabilities we thought we could handle. That’s how our daughter Katrina came to our family. If you put autism on the list of things you think you can handle you probably have a 100% chance of adopting an autistic child. The reality of living with autism is way different than reading someone else’s experience in a book. We had a lot to learn and we still do. We tended to try methods that we thought we all could live with, and that seemed hopeful. Katrina is our best teacher. Anyway, it’s been an adventure and we are happy with our choice.

Very similar in sentiment to what I posted this morning on Facebook. I like my son just the way he is, autism is my life every single day; it is my awareness and I’m okay with that. I don’t need a cure.

I didnt order Es shirt soon enough…darn Jess for waiting til the last min lol so bug wore black…surprised that’s not the color of the day w all the doom and gloom lol…my thoughts are kinda i work to spread awareness and acceptance every day so who cares

I don’t know what you’re going to do with this, but I thought of you the other day when I saw there’s a petition on We The People (White House petition site) to designate Autism Speaks as a hate group and revoke their non-profit status. It has almost 4500 signatures.